Reweaving a Tapestry of Care: Religion, Nursing, and the Meaning of Hospice, 1945–1978

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Article in Nursing History Review · September 2006 DOI: 10.1891/1062-8061.15.113

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JOY BUCK University of Pennsylvania School of Nursing

... people who have worked in general and chronic wards do seem to think it is tather epoch-making that evety one of our patients looks peaceful, contented, and free from pain, whenever they come round the hospice. I do not pretend for a moment that [it] is my work... . Of course, most of the work is just the good nursing.'

When British physician Cicely Saunders wrote those words to a colleague, she was in the process of blending the religious roots of hospice with an academic model of clinical research on pain control for terminally ill cancer patients at St. Joseph's Hospice in London. In preparation for building St. Christopher's, a hospice of her own, she wrote a series of letters to physicians in the United States to learn more about how Americans cared for terminally ill cancer patients. In 1963, Saunders made the first of many trips to the United States to visit medical centers and universities across the country and to lecture about the benefits of the "good nursing" and her work at St. Joseph's. Her eloquent descriptions of the hospice philosophy of care resonated with a small but growing cadre of idealistic nurses, clergy, and physicians who believed that medical care for the dying had grown increasingly impersonal and technologically managed. At the time Saunders began her correspondence with the Americans, she did not know that broad economic, social, and cultural changes underway in the United States were creating an environment ripe for reform. Nor could she have foretold how the transatlantic transfer of knowledge, research, and ideals would serve as a catalyst to ignite the American hospice movement. This article examines transitions in community-based care for the dying before and after the inception of the American hospice movement. Specifically, the early development of modern hospices in Britain and the state of Con- necticut (1945-1974) is used as a case study to examine the interplay among religion, nursing, and the modern conceptualization of hospice. Beginning with a discussion of the antecedents of modern hospices, the article explores how these shaped Saunders's conceptualization of hospice as both place and systematic

Nursing History Review 15 {2007): 113-145. A publication of the American Association for the History of Nursing. Copyright @ 2007 Springer Publishing Company. 114 JOY BUCK approach to caring for the dying. This is followed by an examination of how and why the transatlantic exchange of knowledge and ideas brought a multidisciplinary group together to advance hospice as a necessary health care reform in the United States and the challenges the group faced as they moved toward integrating hospice into the American medical system. In reconstructing the history of hospice, I argue that, although the modern hospice concept may have been in sharp contrast to standard medical and nursing care for the dying in some academic medical centers, it was not wholly different from nursing care provided at home and in specialized homes for the dying in both Britain and the United States. Although few of these homes were called hospices, they were critical to the modern conceptualization of hospice as both a place and philosophy of care for the dying. Previous studies of the American hospice movement typically begin by trac- ing the word hospice, linking earlier hospices to the creation of modern hospitals, and then quickly move to Cicely Saunders and the founding of the modern hospice movement.^ As historian Clare Humphreys argues, this preoccupation with the term "hospice" has resulted in the obfuscation of the role that other earlier homes for the dying played in caring for the terminally ill.^ Moreover, the centrality of medical institutions and physicians in these analyses obscures the significance of the roles of families, nurses, and religious groups in community- based care for the dying and the development of modern hospices. Building on previous scholarship on the institutionalization of life's beginning and end in Canada and home care in the United States,^ this study illuminates the links between faith traditions, personal ideologies, shifting professional paradigms, culture, and class that remain invisible in much modern scholarship of hospice.

Weaving a Tapestry of Care: Early Homes for the Dying

The meaning of hospice has changed through history. The earliest hospices were Christian centers where travelers and the poor, sick, and dying could find comfort and respite. During the late nineteenth and early twentieth centuries, care of the dying was primarily within the realm of the family. Although the "deserving poor" who were sick could enter voluntary hospitals for care, institutional biases afforded higher priority to patients with the potential for cure. Once diagnosed as incurable, the dying poor were sent home or to asylums and almshouses to be cared for until they died.' Beginning in the late nineteenth century, a number of homes opened in the British Isles and America to provide specialized care for the hopelessly ill poor. Most, although not all, of these homes were founded and Reweaving a Tapestry of Care 113

operated by Catholic, Methodist, and Anglican religious groups. Although there were denominational differences in their approach to care for the dying, they were united in their dedication to a "social gospel" that called them to serve the poorest of the poor.^ One of the earliest institutions with an explicit commitment to care of the dying was founded by the Irish Sisters of Charity in Dublin. Mother Mary Aikenhead, founder of the order in 1816, had a special love and concern for dying patients that she "honored as pilgrims departing on a longer journey."^ In 1879, twenty-one years after Mother Aikenhead's death, the sisters founded Our Lady's Hospice, the first hospice in Dublin committed solely to care of the dying. The hospice's initial charter attests to its mission: "Long and sadly has been felt the want of an institution into which those who have no relative or friend to watch beside them in their last hours may be received, tended by charitable hands, comforted and prepared for their passage to eternity."^ The sisters soon acquired a reputation for making the "passage from life to death through a brief darkness a happy one." Our Lady's Hospice's first annual report, published in 1882, documented that during its first three years of existence, the nuns provided terminal nursing care for 336 patients and were "generally well received by the public." The report, which was distributed to the hospice's benefactors, characterized the sisters' attitudes toward their patients by the following: "No words can express the gratitude felt by those whose privilege it is to carry out this great work."^ Historically, compassion, comfort measures, and spiritual care for the sick and dying were the cornerstones of hospice care. The medical knowledge and technology that make optimal symptom management a possibility today were limited. According to a report of expenditures at the forty-bed Our Lady's Hos- pice, from September 1881 to September 1882, £518 was spent on meat; £251 on groceries, wine, and spirits; and £175 on medical attendance and pharmacy. The majority of patients at the hospice died of consumption; the mainstay of symptom management was the use of whiskey mixed with milk, a common treatment for many diseases at the time, but especially tuberculosis.'" The amount spent on the chapel and chaplains was almost identical to that spent on medical attendance and pharmacy and is indicative of the limited pharmacopoeia and the high value early hospices placed on spiritual care for the dying. At the turn of the twentieth century, the nuns opened another home, St. Joseph's Hospice for the Dying, to meet the medical, social, and religious needs of the terminally ill in London. At St. Joseph's, special attention was given to helping patients achieve what was called "soul cures" when a physical cure was not possible." These "soul cures" depended on the individual's acceptance of the Catholic faith and participation in its specific rituals. Although spiritual healing 116 JOY BUCK was paramount, it was generally accepted that this could not be accomplished until the person's physical and mental suffering had been alleviated. The individual was the primary focus of care, but a patient's social and familial relationships were also important. "The sisters believed that happy and holy deaths should be edifying to others, especially non-Catholic relatives, and that estranged family members should be reconciled."'^ Thus, care was extended to the patients' families as well. Another example of an early home for the terminally ill in London was St. Luke's Home for the Dying Poor, founded in 1893 by Dr. Howard Barrett, with affiliations with the Methodist Church.'^ Like St. Joseph's, St. Luke's made clear distinctions between paupers and the "respectable poor" the institution was meant to serve.' Whereas the power and authoritative control of St. Joseph's was vested in the Mother Rectress, at St. Luke's it was vested in the medical director." St. Luke's was thus under secular management and staffed by lay nurses, yet the influence of Methodist theology was evident in the approach to dying.' As at St. Joseph's, religious faith was a critical component of care. The Methodists believed, however, that the dying person's "faith in Jesus" within the broader context of Chtistianity was more important than religious conversion to a particular denomination.'^ The hospice staff were duty bound by their charter to respect the "absolute sanctity" of the individual and to "try to reach that which makes the man himself and does not belong to another."'^ Barrett attested to this philosophical approach in a 1909 report: "We do not think or speak of our inmates as 'cases.' We realize that each one is a human microcosm, with its own characteristics, its own life history, intensely intetesting to itself and some small surrounding circle."'^ As such, each individual's personal characteristics and history were incorporated into the care he or she received. In the United States as in Britain, there were many groups dedicated to service to the dying poor. One of these, the Servants for the Relief of Incurable Cancer, was a tertiary Dominican nursing order founded by Rose Hawthorne Lathrop and Alice Huber." Lathrop began her work after training as a nurse at the New York Cancer Hospital during the summer of 1896.'^'' Initially, she visited patients in their homes, dressed their wounds, and provided what services she could to family members. She was soon joined by Huber, and in 1899, they were accepted into the Dominican Third Order and opened St. Rose's Free Home for Incurable Cancer in New York City.^' At St. Rose's, careful attention was given to making the rooms look bright, cheerful, and homelike. In the summer, patients who were able to move about could sit and walk in a small yard filled with plants. Patients were welcomed regardless of religion, race, ethnicity, or condition of poverty. No class distinctions were made between "deserving" and "nondeserving" poor, and no money was accepted for the services provided. Reweaving a Tapestry of Care 117

Although the Dominican habits the sisters wore evidenced their religious faith, proselytizing was strictly prohibited. No one was allowed to "show abhorrence or disgust at the sight of repulsive ugliness brought about by cancer."^^ A prolific writer, Lathrop deplored the use of terminally ill patients for medical research and often wrote of her disdain in newspaper and magazine articles, correspondence, and in Christ's Poor, a small magazine intended to in- form an ever-widening group of benefactors of their work.^^ For example, when one patient came to the home after discharge from a local hospital with almost half of her face "eaten away" by cancer, Lathrop wrote: "I suppose she is one of those whom they publish that they can 'cure.' I wish someone would stop those unstinted lies about cure which even that good hospital stoops to printing — for the sake of attracting subjects for experiment."^ In contrast, the sisters eased the patient's suffering through morphine, fresh air, and "whatever dainties the patients desired." They were duty bound by the group's covenants to assure that patients, once deemed incurable, were not used as guinea pigs for medical research.'^^ Lathrop did not believe, as most did, that cancer was contagious, and she called on nurses to overcome their fears and provide much needed care for the cancerous poor. She kept meticulous notes and wrote to a benefactor of her desire to publish her findings:

I've been thinking this morning what a lot of valuable information we have collected during all these years of work. How best to relieve pain for the hopelessly sick; how to help do away with the odor of cancer. You see that patients feel terribly about that, and it upsets their nerves and so makes their physical condition worse. And I'd like to tell them how some dressings and some treatments are literally worse than none, for they aggravate the condition rather than helping it. And I'd tell them how cheerfulness toward these patients is almost the best treatment of all.^'^

Unfortunately, she died soon after this letter was written. Her wish to further disseminate this valuable information was never realized. In this brief examination of early homes for the dying, one can note several cornerstones of the modern hospice philosophy and practice. They all had altru- istic missions, were united by their commitment to care for the dying, and were respectful of the patient's individuality. Despite denominational differences in the approach to dying and management of the deathbed, the patient was uni- versally perceived as being composed of three distinct yet interrelated entities: mind, body, and soul. The alleviation of physical and emotional symptoms was considered a prerequisite to healing the soul. Although optimal management of physical symptoms was restricted somewhat by the limited pharmacopoeia of the day, all means available were used to alleviate the patients' suffering. 118 JOY BUCK

Special attention was given to creating a place that was welcoming, homelike, and comforting. The hospices emphasized the importance of "being with" patients through their final hours and attended to their individual needs. Although there was not an explicit commitment to care for the family, there was concern over the patients' social context, in general, and the family, in particular. Despite the prevalence of these antecedents of modern hospices, the value of the care they provided has not been widely appreciated. Yet, they are directly linked to the modern hospice movement by Cicely Saunders, who worked at St. Joseph's and St. Luke's as a nurse, medical almoner (social worker), and finally physician. Both homes played a critical role in her beliefs and approach to care for the dying on which the modern conceptualization of hospice would be built.

Cicely Saunders and the Conceptualization of an Ideal

Although Saunders began her career in health care as a nurse in 1940, she was soon "invalided" by a back injury. Desiring to stay in the medical field, she then trained as a medical almoner (social worker). While working in this capacity at St. Luke's Home, her commitment to improving care for terminally ill cancer patients began. It was there in 1947 that she met David Tasma, a forty-year-old agnostic Polish Jewish refugee who was dying of cancer. During their short but emotionally intense relationship, Saunders's dream to open a home for the dying began to take shape. As Tasma's death drew near, they discussed the needs of dying patients and how best to meet them. Although Saunders wanted Tasma to be converted to Christianity before he died, she respected his religious viewpoint and his need to walk his own path. Before Tasma died, he willed Saunders £500, saying "I'll be a window in your home."'^^ It would be nineteen years before that home, St. Christopher's Hospice, became a reality in London. Within several days of Tasma's death, Saunders volunteered her services as a nurse at St. Luke's Home for the Dying. In this capacity, she was introduced to a unique concoction of medications and alcohol used in the management of pain, the Brompton Cocktail.^^ The use of this mixture had been initiated at the home during the early 1930s, but its use and benefits were not widely known in medical circles. More important to the drug's effectiveness was the novel method of delivering medication. It was given orally rather than by injection, and it was given on a routine basis rather than requiring the patient to ask for it. This practice was based on experience and the premise that once patients were allowed to feel pain, it took more time and greater dosages of medication to alleviate it. The belief that preventing pain by around-the-clock dosing was preferable to Reweaving a Tapestry of Care 119

treating existing pain would become central to Saunders's care of the dying: controlling pain before it controlled the patient.-^' Also central to her future care of the dying was the use of a combination of medications, or "polypharmacy," to manage multiple symptoms. By the mid-1950s, Saunders was solidly committed to care of the dying and sought to return to nursing full time. A thoracic surgeon and mentor from St. Thomas's recommended that, rather than return to nursing, she should "go and read medicine. It's the doctors who desert the dying."^" Although Saunders loved bedside nursing, based on her observations of Dr. Barrett at St. Luke's Hospice, she concurred that medical training was in all likelihood necessary to gain the requisite power and authority to direct and improve medical management of terminally ill cancer patients. By the time Saunders finished her medical training, rapid advances in phar- macotherapy had significantly increased the numbers and quality of drugs available for pain and symptom management. New synthetic narcotics and other drugs, such as new psychotropics, phenothiazines, antidepressants, anxiolytics, synthetic steroids, and nonsteroidal anti-inflammatory drugs, offered tools to ameliorate a wide range of symptoms, but their efficacy in the management of terminal disease had yet to be empirically tested. Armed with a clinical research fellowship from the Department of Pharmacology at St. Mary's Hospital Medical School, Saunders approached the Irish Sisters of Charity with a proposal to work at St. Joseph's Hospice and conduct clinical research on patients' terminal pain and its relief. While there, Saunders's research resonated with the young house staff physicians, and they became her disciples in legitimizing palliative symptom management for the terminally ill through clinical research. The findings from their ongoing research served as ammunition in the fight for effective pharma- cological intervention to alleviate suffering, a controversial notion whose time, Saunders believed, had come.^' It would, however, meet significant opposition from the medical profession.^^ Although the research was necessary to validate her approach to pain management, Saunders heart was really in patient care. She admired how the sisters at St. Joseph's remained at the bedside to sit with and listen to patients.^^ She wrote of how the sisters' integration of care to mind, body, and soul "transformed the wards."^'' Their approach became central to her evolving understanding of care that focused on "being with" versus "doing to" and placed the needs of the patients and their families at the center of care. Of her time at St. Joseph's Hospice, Saunders wrote: "It soon became clear that each death was as individual as the life that preceded it and that the whole experience of that life was reflected in a patient's dying. This led to the concept of 'total pain,' which is presented as a complex of physical, emotional, social, and spiritual elements. The whole 120 JOY BUCK experience for a patient includes anxiety, depression, and fear; concern for the family who will become bereaved; and often a need to find some meaning in the situation, some deeper reality in which to trust."'^ Building on what she learned at St. Joseph's, Saunders envisioned St. Christopher's, the hospice she hoped to build, as "a community [where] people shared the cost of being vulnerable."^^ She embraced the belief that the dying have intrinsic value and are not inanimate receivers but rather active participants in their care. This philosophy broke down the artificial barriers between the various aspects of care and blurred the boundaries of how health professionals and patients existed in relationship to each other. A charismatic leader and extremely successful at articulating the value of such care, Saunders soon became a powerful force in terminal-care reform.

Hands Across the Waters: Conception of the Modern Hospice Movement

In 1963, Saunders made the first of several trips to the United States and Canada to gain support for St. Christopher's and to learn about the care of terminally ill cancer patients in North America.^^ During an eight-week period, she visited eighteen different hospitals and gave a series of lectures about her work at St. Joseph's. Throughout her U.S. trip, Saunders kept a detailed record of people she met, places she went, and impressions of them. On her return to London, she summarized her recorded observations and what she considered to be the strengths and weaknesses of terminal care in America.^^ The major factors she discussed were (1) physiological pain and symptom management; (2) emotional pain and distress of patients and families; (3) the work of social workers with patients and families; (4) nursing education, research, and writing; (5) chaplain training and work; (6) specialized homes for patients with terminal care; and (7) volunteer programs. Her report was then sent to key people she met while in the United States.^' Her observations and evaluations indicate that the transfer of knowledge and ideas flowed in both directions, with Americans learning from Saunders and her from them. From correspondence with several physicians prior to her visit, Saunders knew that there were serious inadequacies in the prevailing models of care for the dying in the United States. Although she assumed that there were no homes for the terminally ill in the United States, she soon learned that she was mistaken. Although finding the homes was not easy, she visited three homes for the dying. Reweaving a Tapestry of Care 121 all run by religious orders and all in New York. Two of these homes, St. Rose's Home and Rosary Hill, were operated by the Hawthorne Dominicans. By the time of Saunders's 1963 visit, the order that Lathrop and Huber founded ran seven homes for the dying in six states, with a total capacity of 700 beds."*^ Saunders noted that St. Rose's held approximately a hundred beds, arranged in eight- and four-bed wards with few private rooms. The atmosphere was "friendly and homelike with patient pictures and belongings in the right sort of untidiness in the wards." Sixteen nuns, few of whom were trained nurses, provided all of the care with the assistance of one male orderly and a porter. At Rosary Hill Home, also operated by the Hawthorne Dominicans, Saunders found that patients not yet in the terminal phases of their disease often helped care for patients who were. Thus, despite their illness, they contributed to the care of those whose needs were greater than their own. It is interesting to note that, despite the limited training of the care providers, the patients were well cared

Due to limitations in time and funding, Saunders did not have opportunity to visit additional homes and institutions committed to the terminally ill.'*^ The relative public invisibility of the valuable services provided in these homes reflected not only the humility of the religious orders that ran them but also the curative biases of larger medical institutions, the stigmatization associated with "incurability," and marginalization of care for the dying. Throughout Saunders's report, her religious conviction, presuppositions about what she would find, and her firm belief in her approach to terminal care and the role of nursing within that were evident. Of nurses, Saunders wrote that many of the trained (professional) nurses were relegated to administrative duties, leaving much of the direct patient care to practical nurses and "aid[e]s."''^ She observed that due to their administrative function, nurses were not involved with patient care, and thus, she reasoned, not fully cognizant of their needs or those of their families."*^ For example, of a British nurse working in Boston, Saunders wrote: "I met a 'head nurse' from Cuy's [Hospital in London] ... [who told me] that the administration and paper work [in the U.S.] were more swamping than in England. She had managed to re-organize her work with the help of a ward secretary and said that at last she was getting near her patients. Nearly all the nursing stations I saw were very well laid out and equipped. But they were usually full of nurses, and, incidentally, that is where I found her too."^*^ Saunders also observed that patients often felt "safest with the nurses who are cheerful and ordinary, who can express the feelings spontaneously and share mundane comments on life in and out of the ward.'"*^ She found the migration of nursing education from training schools to the university a bit "strange to those of us with a practical approach.'"*^ These comments exposed not only her 122 JOY BUCK

biases of the appropriate role and fianction of nurses but also the formalization of the nurse-patient relationship and the creation of a therapeutic milieu.'" Regardless of her opinion about the appropriate role, function, and education of nurses, Saunders was complimentary of the nursing education programs she visited. She noted that these programs focused attention on students' understanding of the patient's individual personality, concern with emotional problems, and a "relationship versus task" approach to nursing.'" As such, she found that the American nurses used a patient-centered approach to care similar to the approach she so admired in the nuns at St. Joseph's. Although she was somewhat critical of the limitations of nursing care for the dying, primarily related to the limited contact "trained nurses had with patients," Saunders believed that the American nurses were quite aware of the inadequacies of the system of care for the dying and were using "much imagination in trying to improve matters." She was also impressed that nurses were involved in several interesting research projects as coinvestigators, assistants, and, in some cases, the principal investigator." She concluded the report by discussing several "valuable exchanges going on today between workers in medicine and nursing and the writers of philosophy and theology."'-^ She emphasized the similarities between her work and that of her colleagues in the United States and reflected that on both sides of the Atlantic, many health care professionals and clergy possessed "compassionate simplicity."'^

"The Moment of Truth": Birth of the American Hospice Movement

Saunders's first trip to the United States marked a pivotal point in terminal-care reform. For one American nurse, Florence Wald, Saunders's 1963 talk to the Yale University School of Nursing proved to be providential.''* Considered by many to be the "mother of hospice nursing" in the United States, when Wald first heard Saunders speak, she was at a critical point in her life. As dean of the School of Nursing, Wald became a leading advocate for major reforms in nursing education and the clinical role of the nurse.'^ Like Saunders, she believed that professional nurses should "rid themselves" of nonnursing tasks such as "administering the ward, transcribing information, and ordering, giving, and charging drugs" so they might return to the bedside to provide patient care.'^ She had grown increasingly dismayed by the growing trend in medicine to focus on cure and technology rather than on people.'^ Frustrated clinical Reweaving a Tapestry of Care 123 faculty and students often complained to Wald about physicians who refused to respond to patients' queries such as, "What's wrong with me?" and "Am I going to get better?" When the nurses suggested that they might speak to the patients if the physicians were uncomfortable, they were met with: "If you're going to talk about this, I'm going to see that you're not allowed to see the patient anymore."" Based on the research and writing of nursing leaders such as Doris Schwartz and Jean Quint [Benoliel], as well as her observations, Wald believed that communication barriers between patients and professionals were pervasive. Moreover, the "inadequate and ineffective" communication patterns also existed among the professionals. "Both professions [nursing and medicine] bear a responsibility to identify and resolve the conflicts that occasionally arise between them, instead of mutually withdrawing, as often happens today, or one profession deprecating the other." She firmly believed that nurses were able to create the bridge between the seemingly antithetical systems of cure and care and that nurses should be equal partners, including serving as leaders, of interdisciplinary care teams."^^ Saunders's approach encapsulated Wald's thinking about the type of care patients should have across their lifespan. Moreover, the centrality of nursing and the multidisciplinary nature of hospice care was exactly the framework Wald believed was necessary to engender change. During the next several years, Wald and Saunders maintained correspondence and made plans for Saunders to return as a visiting professor in nursing. Saunders agreed that such a visit would be extremely valuable for her thinking and planning for the future. She also emphasized the importance of clinical training versus theoretical discussions and lectures on palliative symptom management.*^-^ In 1966, Saunders returned for six weeks as Annie Goodrich Visiting Professor of Nursing. She taught student nurses and made rounds with surgeons, pedia- tricians, and psychiatrists.""^ In addition, Wald organized two major functions: the Annie Goodrich Visiting Professor Lecture and an Institute on Care of the Terminally 111. The lecture was held on April 26, and local dignitaries, faculty, students, and hospital staff were invited to attend. The institute was held just prior to Saunders's departure in May. Saunders's title for the Goodrich lecture, "The Moment of Truth," reflected her understanding that many health professionals felt inadequate in their com- munications with terminally ill patients and their families.*^ As she introduced the lecture, she emphasized the universality of death and connected it to living: "I have chosen the title 'The Moment of Truth' not because I just want to discuss the perennial questions, 'Should you tell the dying patient the truth?' (which is not the right question anyway), but because meeting dying patients and facing the fact of death does concern all of us, whether we're nurses, doctors, social workers, psychologists, or any other discipline. I think perhaps almost most of 124 JOY BUCK all, when we're members of the family."^' To Saunders, the "moment of truth" involved much more than the logistics of who should say what and when to say it. Rather, the moment had "deep and far-reaching implications" that held relevance to "the whole of life" of humans. To illustrate the benefits to her approach to care for the dying, she shared stories of dying patients who arrived at St. Joseph's expressing feelings of guilt, failure, and rejection. She showed slides of these patients at admission looking anxious and in pain and again during the last days of their lives looking comfortable, alert, and active. These images highlighted the key components of hospice care and captured the good that can come from care that focuses on the alleviation of physical symptoms, as well as the social, psychological, and spiritual dimensions of suffering.^*^ As Saunders explained, because St. Joseph's was supported by the Catholic Church and philanthropy, and thus financially independent of the British National Health Service, the care it provided was based on the needs of patients and their families rather than on their ability to pay. As a result, patients and families were comforted that the hospice beds "did not have a kind of parking meter beside them."''^ The notion that they would have a bed as long as they needed it was particularly reassuring to dying patients, who were discharged from acute care hospitals once they were deemed incurable. Saunders also reflected on the experience of caring for the terminally ill from the perspective of professional and family caregivers. She explained that neither family nor health professionals wanted to see a loved one or patient "swamped with distress caused by the treatment or with drugs" or suffering from a sense of being isolated because people avoided them. Rather, both family and professionals wanted to see someone who was able to be him- or herself. Although many professionals dismissed care for the terminally ill by saying "there is nothing more to be done," Saunders advocated for health professionals to provide care that was relevant to the patients' condition, regardless of curative potential. She stressed that the place and presence were important components of this care. Although Saunders believed "home was the best place," social circumstances often precluded patients from remaining there. Saunders told a story about a patient that illustrated how creating an environment that allowed patients to "be themselves" was a gift to both the dying and the bereaved. When the patient and his wife first entered St. Joseph's, they were both tense; he because he was in pain and she because she felt guilty that she would not be able to care for him until the end. The matron and medical officer welcomed them into the hospice, making them feel at home. His pain was quickly controlled by an analgesic mixture and, in Saunders's words, "He was lying back in his bed filling in his football pools, an English form of gambling. This is really the way to help her; I couldn't take away the parting, but at least she could remember him like this."^^ Reweaving a Tapestry of Care 125

Saunders's visit culminated with an Institute on Care of the Terminally 111. The institute brought together a multidisciplinary group of eminent thinkers and practitioners to exchange information about death, dying, and bereavement. The majority of the approximately thirty people who attended the forum concurred that there were significant deficiencies in the existing models of terminal care in America. The evolving philosophy of hospice care that Saunders described provided an intellectual opportunity for scholars and clinicians to work to further develop hospice as an alternative to dying in an intensely curative medical milieu. Hospice was both a clinical model of care that could be empirically tested and a facility that was amenable to environmental engineering. As such, hospice was invaluable to their collective commitment to terminal-care reform. During the next few years, correspondence among Saunders, Wald, and leaders in the emerging discipline of thanatology proliferated. The free exchange of ideas and research created a connectedness and synergy between them that transcended professional disciplines and geography, and thus the foundation for the modern hospice movement was laid.

St. Christopher's in the Field

Between 1966 and 1968, Wald moved steadily toward her dream of providing hospice care in Connecticut. She maintained correspondence with Saunders and visited St. Christopher's while it was being built. Wald, already immersed in the terminal-care reform literature, contacted another nurse researcher, Jeanne Quint (Benoliel), as well as other leaders of the death-and-dying movement, such as Kubler-Ross.*"' She also discovered an ongoing research study being done at Yale-New Haven Hospital by sociologist August HoUingshead and pediatrician Ray Duff, funded by the U.S. Public Health Service Division of Nursing. The study's findings, published in 1968 in Sickness and Society, challenged those who praised medical and technological advances that extended life without a full appreciation of the problems some of these treatments created for patients and their families.'' These studies documented the need for reform and were invaluable to Wald as she built a case for terminal-care reform in Connecticut. After stepping down as dean in 1968, Wald took a sabbatical and traveled to England for a working vacation at St. Christopher's after its opening. As she worked on the wards, she experienced firsthand the healing nature of hospice care that Saunders had spoken of so eloquently. This type of nursing resonated to the core of Wald's being, and she returned home with a renewed commitment 126 JOY BUCK to hospice that bordered on religious zeal. She wrote to Saunders about her plans to transplant hospice on American soil:

Cicely, I find it so difficult to thank you -1 always do - because you give so abundantly and I know [that] you don't need thanks. Just let me tell you - my three short weeks at St. Christopher's were among the most exquisite of my life. I relive them constantly - not just every day but many times every day. I am so grateful to have been fortunate enough to meet you and everyone whose breath, whose life is St. Christopher's. I only hope that I can be a part of the whole idea and spirit. Now as for what I call 'St. Christopher's in the Field.' My primary effort has been to describe St. Christopher's Hospice. I've begun with family and with friends and then with 'simpatico colleagues.'^'

The simpatico colleagues she referred to included the Reverend Edward Dobihal, an evangelical Methodist minister with a background in psychotherapy and bereavement, and Morris Wessel, a pediatrician. During the next year, the growing group worked on a plan for a research study on dying patients and their families in the New Haven area. In 1969, they began the "Nurse's Study of the Dying Patient and His Family" with fiinding from the U.S. Public Health Service Division of Nursing. By August 1970, the research group had grown to include another nurse, Kathy Klaus, and breast-cancer surgeon Ira Goldenberg, and they had gathered enough data to move forward with their plans to build "St. Christopher's in the Field." On October 29, 1970, the group met to formalize plans with Saunders and Sister McNulty, a nurse and matron at St. Christopher's, in attendance. McNulty accompanied Saunders on the 1970 trip to learn more about clinical research at several American nursing schools. In the meeting, the group outlined issues for consideration and a road map of how to proceed.^^ Beginning with purpose and philosophy, Saunders started the discussion by describing St. Christopher's. She emphasized the religious foundation the hospice was built on but stressed that it was nondenominational and the importance for professionals and patients to be able to define religion in their own terms.^^ The group then shared their individual thoughts and motivation for moving forward with the hospice. Goldenberg, an observant Jew, believed that there was a need in the community to "minister to" terminally ill patients in need. "We are here to set up a facility that will meet a need in the community."^* In response, Saunders provided explicit information on how they handled various situations at St. Christopher's. Soon after this meeting, Dobihal traveled to St. Christopher's. Both he and his wife Shirley, a licensed practical nurse, worked on the wards and attended meetings for seven months. They found St. Christopher's to be a unique institution for learning and teaching, and their prolonged stay afforded them the Reweaving a Tapestry of Care 127 opportunity to fully engage in the work there. St. Christopher's environment was in sharp contrast to the American teaching hospitals, both in its approach to patients and their families and in the professionals' approach to each other.^' Once admitted to the hospice, patients were welcomed by the matron and medical officer, made to feel at home, and reassured that their bed would be theirs for as long as they needed it. Hospice personnel were mutually supportive and shared responsibility for the "total work of the hospice."^*^ The interdisciplinary senior staff, which included Saunders, the director of nursing, and other administrative heads, met on a weekly basis, as did the nursing staff. A larger interdisciplinary group met on a biweekly basis to discuss specific issues such as research and financial matters. Smaller groups also met on a weekly basis to discuss a series of philosophical topics, such as the meaning of "being a person" and "freedom." These small-group discussions were attended by a diverse gathering of professionals, staff, and volunteers. As important to Dobihal, prayer groups were held three times a day in the chapel and led by various members of the staff.^^ Dobihal was pleased to learn that this religious framework was not distasteful to Jewish and agnostic patients. To the contrary, he found that they respected it and "spoke positively about the religious practices even if they chose not to participate in services." This was important to him for several reasons. First, there were several people on the research team who were uncomfortable with the overtly Christian foundations of St. Christopher's. Like Saunders, Dobihal saw hospice care as an extension of faith. Frustrated by the prevailing medical institution's bias toward care of the temporal body to the exclusion of psychological and spiritual realms, he was convinced that the American hospice must have a religious base that was equal to the medical.^* While Dobihal was in England, Wald continued her efforts to garner support for hospice. Upon his return to the United States, the group was ready to "shift gears" and quicken the pace toward its goal of building a hospice.''' They decided to split the growing group of supporters into two subgroups. A steering committee was created comprising the research team, Lutheran minister Frederick Auman, and Catholic priest Robert Canny. Social psychologist Sherry Israel was invited to serve as a process recorder to observe and document the group's collective dynamics.^" They met on a weekly basis and bore primary responsibility for the hospice's planning and development. The second, larger group was composed of a growing group of hospice supporters who would help with various task forces. They also met on a weekly basis, and Dobihal served as chair of both groups.^' Between March and May 1971, the steering committee discussed many topics. The group expended a considerable amount of time and energy devel- oping a statement of philosophy and underlying assumptions about hospice 128 JOY BUCK care. Although they used St. Christopher's as their model, for a variety of reasons, their hospice would have a distinctly American flair. The group quickly agreed on three assumptions. First, hospice was a "total community" that included staff, patients, their families, their social context, and the community at large. Within this context, care would be directed by the expressed desires of patient and family about how "they wished to be served." Second, the hospice facility would be physically structured to maximize socialization and community participation. Unlike St. Christopher's "open ward," adaptations in the environmental design would be made to accommodate the "American routine and expectations" for privacy and autonomy. Third, the group would use aninterdisciplinary approach to their work. Professional roles would be blurred to allow professionals to "substitute" for each other and "call on each other for

A fourth assumption, concerning the role of religion, resulted in a debate over whether the religious underpinning of hospice care should be implicit or explicit. Saunders planned the creation of St. Christopher's with a lay group and cautioned the American group that if clergy were involved, it was important not to build them or their religious views into the development of the hospice.*^ This view may well have been due to her desire to emulate the St. Luke's Hospice model, which had a medical director and a Christian base. It also reflected her desire to maintain control over St. Christopher's without interference from others. St. Christopher's had both a medical and a religious component; medicine was essential, but religion was an explicit element of care. Saunders identified certain acts, such as nursing care, as religious acts. In a semiecumenical approach, she embraced Christianity rather than a specific religious orthodoxy within it as the central element of care. She described St. Christopher's as having a "Christian base" rather than a "religious" one.*'* Whether Christian or religious in nature, the question of how to integrate this spiritual component of care was vexing to the American group for two primary reasons: their perceptions of the federal government's grant requirements for the separation of church and state, and the demographics of the religiously plural steering committee. The group struggled to find the proper language that would accommodate myriad faiths and personal philosophies. Dobihal and other clergy on the steering committee wanted those who used "religious vocabulary" to feel at home using it at the hospice, rather than having to "translate everything into secular language."*' As they discussed the use of the word "God" in their philosophy statement, there were some who believed it was a universal term with which everyone could identify. To others, the group was united by the collective sense of "goodness," and the unifying element was their working toward a common goal rather than religious orthodoxy. Within this context, they believed Reweaving a Tapestry of Care 129 humanism rather than religion was the common denominator among people and served as the basis of all religions and sects.^"^ This debate over the explicit and implicit foundation of hospice provides interesting insight into the two groups' views of nursing. Saunders believed nursing was at the core of hospice, although she also thought it should be under the direction of a physician. Because nurses were omnipresent and responsible for blending various approaches in the care of patients and their families, she and Wald were in agreement that the hospice was essentially synonymous with nursing. As such, hospice was a nursing facility. Within that context, the chaplain would be brought in when necessary as a "religious consultant," much like the role of the physician and social worker who each had their own niche and who made recommendations about care as consultants. After several months, the group agreed on a philosophy statement that reflected their collective idealistic fervor, their commitment to hospice, and their struggle for an inclusive philosophy:

Out philosophy cannot be a creed and yet our explorations and growing bonds cause us to oft:en say, 'We believe.' We believe in honoring the creed and philosophy of every man. We believe in the dignity of personhood - patients, families, workers - and will nurture a spirit of respect of every person. We believe in the importance of feelings, in the fact that there are differences between people to be creatively shared, in love which can be experienced between people and will support them. Some say 'We believe in God' in different ways, but important in that our daily work reflects a purpose that is beyond us and is moving us.... This philosophy cannot be concluded in words, for it is one to be tested in action, to remain open to the learning that will come from our relationships with each other, and to be creatively changed and added

Despite their idealistic statement of philosophy, the group was cognizant of more pragmatic issues such as funding, organization, and structure. One of their primary concerns was whether they should have a fiscal intermediary, such as a hospital or university, or whether they should serve as their own agent. In part, the answer to this question depended on regulatory and financing mechanisms at the state and federal levels, something they knew little about. Between 1971 and 1974, a loosely defined group of idealists created a non- profit corporation. Hospice, Inc., and were well on their way to making their dream of St. Christopher's in the Field a reality. As new board members and staff came on board, they traveled to England to experience St. Christopher's firsthand. They returned home with a slightly different interpretation of how the hospice philosophy should be translated into the American medical system. During these formative years, the hospice advocates received a valuable lesson 130 JOY BUCK on the difficulties they faced in navigating the Connecticut medical system and gaining community and political support for hospice. Although Saunders continued to be an important influence on the group, they would need to re-create and clearly articulate their own vision of hospice in terms that were palatable to a broad base of individuals and institutions. For example, although not explicitly stated, hospice's focus on "helping people die well" was inconsistent with the curative nature of the medical mainstream. The media had published stories about St. Christopher's and the use of experimental and illegal drugs such as LSD and heroin to treat pain and other symptoms of dying.*' Given the antidrug sentiment and societal discourse on euthanasia, abortion, and patients' rights at this time, the possibility for public and professional backlash against hospice was very real.'" In addition, unlike Saunders, who chose to remain independent of the National Health Service in England, the group sought integration into the American system early in the planning stages. Moreover, they needed to define hospice as a patient-care model that was "distinctly different from care in nursing homes or hospitals" so they would not be seen as duplicating services or competing with existing programs." Initially, the group considered incorporating an inpatient hospice unit into an established acute-care facility—namely, Yale-New Haven Hospital—but financial concerns and space limitations made this not feasible. They next inves- tigated renovation of a nearby convalescent home but decided that this facility was too large for their purposes and the cost of reconstruction would be more than construction of a new facility. With the possibilities of moving into existing buildings exhausted, the group decided on new construction. The group hired Yo-Li Chan as their architect, primarily because of his talent, his willingness to travel to St. Christopher's, and the fact that he had never designed a health care facility. Although one would typically look for someone with previous experience with a certain facility type, they did not want their architect "tainted" by preconceptions of what a health care facility should be.'^ Rather, they wanted someone who could make sensitive observations about the needs of patients, families, and care providers and translate these into the architectural design. While at St. Christopher's, Chan observed that dying patients were often anxious about time; there was "either not enough of it or too much." He also found that beauty and reminders of the continuation of life could be healing for both patients and family. Based on these observations, his design made liberal use of windows and skylights to help patients mark the "natural passage of time, from sunrise to sunset, from season to season."'^ In addition, the building's design incorporated a number of "transition spaces" that served as "escape valves" for patients, family, and staff. The rooms had corridors on either side; one served a utilitarian purpose, and the other opened into a greenhouse large enough to Reweaving a Tapestry of Care 131 accommodate visits from patients and family, even if they were bedridden. The greenhouse opened to the outdoors, again with doors large enough to accommodate easy access by patients. According to Chan, this attention to space and nature were important to patients and their families: "When life is coming to an end, the idea of being closed in is very frightening, so in every part of the building we tried to create a feeling of openness. Even when the doors of the glassed greenhouse corridor cannot be opened, patients still have a view of the terrace. The plants also help create the feeling of being able to go out, which is very reassuring to patients."''' Although the group had developed an esthetically pleasing and purposeful facility design, they still faced a long and hard uphill battle to achieve licensure for it. The hospice they envisioned did not fit neatly into existing health-facility licensing categories. Because of the interdisciplinary nature of hospice and the skill required to assess, diagnose, and treat symptoms, hospice was more than "nursing home care," which many considered to be primarily custodial. More- over, competition for limited resources within the health care system was keen, and the chairman of the State Hospital Licensing Council was also the pres- ident of the State Nursing Home Association. Based on the assumption that hospice would compete for patients, he took a dim view of their certificate-of- need proposal." Stymied in these quarters, they decided to seek designation as a chronic disease hospital, and in August 1973, they received an endorsement for forty-four chronic-disease beds, with two caveats: the facility had to be located in New Haven, Ansonia, or Seymour, and the site must be selected and approved within one month.'^ They were unsuccessful in achieving these conditions and moved on to explore other options. Hospice, Inc., was interested in several properties, but the most promising site was in a residential neighborhood in Hamden. Building a health care facility in a residential area required a change in zoning, which in turn required another public hearing. During the public hearing, a panel of hospice representatives made a compelling and emotional presentation to a standing-room-only crowd. They were unprepared for the response they received from the audience. Several questions, such as, "Isn't it dangerous to have dying patients out where there aren't any intensive care units?" and "Why do you need such a beautiful building, these people are dying, after all?," revealed professional and cultural biases about death and the terminally ill.'^ These questions were relatively benign, but they were accompanied by more vexing questions and comments that compared hospice to euthanasia at best and the methods of the Nazis at worst. Additional questions were related to professional and agency domain and included, "Why do we need hospice when we have nursing homes and hospitals?" and "Doesn't the VNA do this already?" As telling, physicians demanded an answer as to what role they 132 JOY BUCK would have in hospice and concerns about turning cancer patients into drug addicts. Their expression of these concerns, in turn, elicited even more hostility among the audience. Although there was some vocal support in the room, the unexpected and heated opposition resulted in a denial of their proposal.'* The message was loud and clear. Hospice had been so immersed in their mission that they failed to keep their finger on the pulse of the community. The group had done years of soul-searching and discussion about these issues; many in the community had not. They had not done enough work to educate the public about hospice and garner community support before moving ahead with their plans. Moreover, their idealism and passion were not sufficient to guide them through the politically fraught maze of the Connecticut medical system." It became clear that if the hospice was to succeed, they needed someone who was politically savvy. Dennis Rezendes fit the bill and was retained as a consultant to the board. Rezendes had a BA in public administration and had worked closely with the mayor and New Haven government, as well as on Connecticut governor Ella Grasso's political campaign and transition team. This politically astute consultant possessed the skills, knowledge, and contacts that would help the hospice board deal with regulatory agencies and obtain licensure.'"" As the group moved forward, they learned from their mistakes and carefully honed their message to emphasize the positive aspects of hospice and mitigate the negative. They received funding from a variety of private foundations and local and state governments for facility planning, community education, and home-care-program development. Each proposal the group submitted reflected the ongoing refinement of the hospice concept of care that would not only offer an alternative to existing models of care for the dying but also approximate the medical model by emphasizing the management of symptoms. Even so, they used the stories of patients and their families to garner support for hospice. For example, the proposal the group submitted for a national hospice demonstration project concluded with an uplifting message from Dobihal's experiences at St. Christopher's, a message that was designed to help the reviewers overcome fears related to hospice while demonstrating its need:

In England, I met and talked with patients whose physician had predicted a life expectancy of five to six weeks. I was talking to several of these patients two years later. Their life included wotk, continuing to maintain the home, gardening, enjoying a holiday, a satisfying personal and social life. The hospice caring for them had not treated their disease but it had loved and cared for them as important persons. One of my dying friends in the hospice in England said, "You know it's good to be in this place where I belong, where I felt welcomed. Where people care - even love me. A place where people have time to share with me. They're never too busy for a smile, a word, or to sit down and hold my hand, even cry with me. So you've come all the Reweaving a Tapestry of Care 133

way from America to learn from us. Well go back and if you don't have places like this, start one for people like me." I heard her request on behalf of others, pray to God daily to help us meet it, and share it now with you.'*"

At the time that Dobihal wrote those words. Hospice, Inc., had more than 200 members, friends, and advisors, including representatives from business, city planning. Blue Cross/Blue Shield and other insurance companies, and Commu- nity Health Care Center Plan.'"^ With adequate financial resources and their collective broad base of political, professional, and business expertise, a clearly defined mission and plan to achieve it, and hence, emotional appeal. Hospice, Inc., was well positioned to move forward with their home-care program.

Hospice, Inc.: The Modeling of a Movement

Between 1974 and 1980, Hospice, Inc., was transformed from an embryonic home-care program to a projected hospice facility with serious problems to a sustainable program of care for the terminally ill in Connecticut. During this formative period, the hospice philosophy the group espoused was translated into legislation that liberalized reimbursement for home care and officially defined hospice as a special category of chronic-disease hospital. Although Saunders and the Connecticut hospice leaders played a significant role in "spreading the hospice gospel," it was Swiss-born psychiatrist Elisabeth Kubler-Ross who had the most profound impact on the collective consciousness of Americans on the appropriate care for the dying. She helped revolutionize society's conceptualization of death, dying, and bereavement with the publication of her book. On Death and Dying, in 1969.'"'' Despite her critics, and there were many, Kubler-Ross's writings reached international lay and professional audiences.'"^ By the power of her writing and willingness to address the subject of dying, she was able to bridge the academic and grassroots realms of the death-and-dying movements and help stimulate a significant reform of the care of the dying and bereaved.'"^ In the early 1970s, nurses commonly cited Kubler-Ross as having the greatest influence on their attitudes toward death, and by 1976, her book had sold more than a million copies.'"* One journalist exclaimed, "No other single person has so dramatically turned around an entire generation of opinion makers on a single subject."'"' Hospice, Inc., created a National Advisory Council in 1974, with Kubler- Ross as the chair. The primary function of the Council was to transfer information about hospice on two levels: first, to the general public, and second, to hospices 134 JOY BUCK

across the United States. Through the Council, it was hoped that the public and legislators would become more responsive to the need for the type of care that hospice provided and to "agitate for change in the present health-care delivery system, by reform in the existing institutions and by replication of New Haven's Hospice in their own communities.""" By 1978, the term "hospice" had been copyrighted and strict criteria were set for its use. Connecticut hospice leaders joined forces with hospice advocates from Florida and other states to form the National Hospice Organization as a mechanism to catapult hospice onto the legislative agenda for Medicare reform."' In 1978, when the author of a Washington Post zrixclt. questioned, "Can the hospice movement take hold in America?," Hospice, Inc., was providing guidance to some hundred local hospice groups across the country."^ Like Hos- pice, Inc., many of these fledgling hospices were founded by idealistic nurses, clergy, and physicians. The majority of these hospices started as voluntary efforts and relied heavily on volunteer nurses, often providing patient care, bereavement counseling, and other valuable services after completing their regular shift at work."^ Others became administrators, community activists, educators, and researchers. With their help, hospice was well on the way to becoming a national phenomenon as a specialized and codified model of care for the terminally ill.

Reweaving the Hospice Tapestry: Lessons from the Past

Throughout much of recent history, society has been hindered in efforts to improve the experiences of dying patients and their families by a number of social, cultural, economic, and political factors. In the 1970s, health care reformers turned to hospice as a humane alternative for the institutional care of the dying that many believed had become increasingly impersonal and technologically managed. Hospice cut across many societal boundaries and challenged assumptions about where care should be given, who should provide it, and who should be in control of the decisions surrounding that care. Yet, more than thirty years after Hospice, Inc.'s, home-care program opened, serious inadequacies remain in our contemporary model of care for the dying. Ideally, hospice interdisciplinary care teams facilitate healing in the face of separation and loss and help patients die comfortably, at home, surrounded by those who are most important to them. This is consistent with the desires of 70 percent of Americans; unfortunately, only 24.9 percent of Americans realize this wish."'' More than one-third of dying patients spend their last days in the intensive care unit, and more than Reweaving a Tapestry of Care 135

50 percent of these patients die in moderate to severe pain."' The philosophical underpinnings of hospice as low-tech, high-touch integrative care for the mind, body, and spirit are gradually being supplanted by technologically driven and institutionally based medical intervention."^ So what can be gleaned by this historical analysis to help us understand how we arrived at this point? First, it exposes persistent societal biases that result in an overemphasis of the value of physicians and medical institutions to society, while overlooking the significance of the role that families, religious groups, and nurses have historically played in community-based care of the dying. The contemporary philosophy of hospice care evolved from a tradition of nursing care provided at home and in specialized homes for the dying. Although few of these homes were called hospices, they were critical to Saunders's conceptualization of hospice as both place and philosophy of care for the terminally ill. Saunders's medical training afforded her the requisite power and credibility to speak to physician groups and authority to lead other health professionals. Yet, it was her deep religious faith, love of nursing, and lessons she learned at St. Luke's and St. Joseph's that served as the foundation on which the hospice movement was built. As such, Saunders and other hospice advocates used a tradition of nursing care as a framework to organize, deliver, research, and reform medical care for the dying. The study also reveals how the synergy of time, place, person, and circum- stance was critical to the inception of the American hospice movement. From its inception, the movement represented the confluence of a diverse group of individuals with different motivations and interpretations of how care of the dying and bereaved should be handled. Elite hospice leaders sought to demys- tify the highly philosophical notions of the meaning of life and death, "being with," ministering to, and caring for dying patients and their families. Yet, it was the juxtaposition of personal ideologies, shifting professional paradigms, and social reform movements that served as catalysts to ignite and fuel the hospice movement in the United States. The civil and women's rights, death with dignity, and consumer movements laid a foundation for a growing public discourse about the quality of life, patients' rights, and the place of informed consent in the medical system."^ Stories of how cancer patients suffered while undergoing aggressive curative treatment were widely publicized in the popular press and raised significant questions regarding the humane treatment of cancer patients. Despite the promise of curative medicine, many outside and within the health professions were beginning to wonder if the quest for cure was worth the human toll in suffering. Nursing education began to focus on alternative approaches to care, ethical and spiritual issues related to death and dying, and the hallmark of hospice, interdisciplinary teamwork."* The emergence of the discipline of 136 JOY BUCK pastoral counseling and hospital chaplains helped reintroduce faith as an important element of care for hospitalized patients. As the hospice concept was rewoven into the fabric of the American medical system, new programs developed in accordance with the personal ideologies and professional paradigms of their founders and the environment in which they were created. Although they were all committed to a similar vision of what interdisciplinary hospice care should be, each group, each discipline, and, arguably, each individual viewed what this care entailed, where it should be provided, and who should be in control through a slightly different lens. Although Saunders served as a charismatic figureheado f the modern hospice movement, nurses and clergy were critical to its vitality in the United States. A self-identified idealist, Florence Wald provided much of the vision, passion, and courage to advance hospice as viable terminal care in the United States. Wald was in search of a way to reform care for the dying and to advance nursing within that reform. Many nurses followed her lead and became powerful forces within the grassroots hospice movement. They found strong allies in the idealistic clergy who, like Edward Dobihal, believed that the secularization of medicine had created a division among the physical, spiritual, and emotional components of care for the dying. Dobihal was searching for a way to connect the three and advance the role of clergy in the care of dying patients and their families. Although the contributions of some physicians, most notably Elisabeth Kubler- Ross, cannot be denied, for the most part the medical establishment was slow to accept the hospice concept. Whereas they endeavored to block the hospice movement in Connecticut and elsewhere, nurses and clergy led the charge for reform.

Parting Words

Throughout history, without the power base of physicians, nurses have often initiated reform on behalf of patients and families. These nurses' contributions to the improvement of the health and well-being of patients, families, and communities have been substantial. Whereas Wald's role in the advancement of hospice has recently come to light, the role of nurses in terminal-care reform predated her. The modern hospice movement was built on the legacy of nursing care provided at home and in early homes for the dying. With religion as the warp and presence as the weft, these nurses wove a rich tapestry of care for mind, body, and spirit in those early homes. Although this legacy of care has been eclipsed by the vitality of the modern hospice movement, Saunders clearly understood Reweaving a Tapestry of Care 137 its comparative value when she wrote: "I do not pretend for a moment that [it] is my work. ... Of course, most ofthe work is just the good nursing.""'

JOY BUCK, PHD, RN Postdoctoral Fellow Barbara Bates Center for the Study of the History of Nursing and Center for Health Outcomes & Policy Research University of Pennsylvania School of Nursing Philadelphia, PA 19104

Acknowledgments

This work was supported by National Institute for Nursing Research: Indi- vidual National Research Service Award (F31 NR08301-01) and University of Virginia (2003-2005) and Advanced Training in Nursing Outcomes Research (T32-NR-007104) at the Center for Healdi Outcomes & Policy Research (2005- 2007).

Notes

1. David Clark, ed.. Cicely Saunders: Founder of the Hospice Movement, Selected Letters 1959-1999 {London: Oxford University Press, 2002), 12-13. 2. Paul DuBois, The Hospice Way of Death (NewYork:Hum^Scitnces?ress, 1980); Sandol Stoddard, The Hospice Movement: A Better Way of Caring for the Dying (New York: Stein and Day, 1978); Lenora Finn Paradis, The Hospice Handbook: A Guide for Managers and Piz««frf (Rockville, MD: Aspen Corporation, 1985); Cathy Seibold, The Hospice Movement: Easing Death's Pains (New York: Twayne, 1992); David Clark, "Originating a Movement: Cicely Saunders and the Development of St. Christopher's Hospice, 1957-1967," Mortality, 3, no. 1 (1998): 43-63. 3. Claire Humphreys, "Waiting for the Last Summons: The Establishment of the First Hospices in England 1878-1914," Mortality, 6, no. 2 (2001): 147. 4. Susan L. Smith and Dawn D. Nickel, "From Home to Hospital: Parallels in Birthing and Dying in Twentieth-Century Canada," Canadian Bulletin of Medical History, 16, no. 1 (1999): 49-64; Karen Buhler-Wilkerson, No Place Like Home: A History of Nursing and Home Care in the United States (Baltimore: The Johns Hopkins University Press, 2001). 5. James Walsh, The History of Nursing {^tw York: P.J. Kennedy, 1929). 6. For additional information, see Humphreys, "Waiting for the Last Summons," 146—165, Alberta Hapenny, A Legacy of Love: A Biography of Rose Hawthorne Lathrop in Ti^rff/km (Pittsburgh: Dorrance 1999); Sister Mary Joseph, Out of Many Hearts: Mother M. Alphonsa Lathrop and Her Work (New York: Servants of Relief for Incurable Cancer, 138 JOY BUCK

1965); Derek Kerr, "Mother Mary Aikenhead, the Irish Sisters of Charity, and Our Lady's Hospice for the Dying," American Journal of Hospice & Palliative Care, 10, no. 3 (1993): 13-20. 7. See Kerr, "Mother Mary Aikenhead," and Stoddard, The Hospice Movement, 87. The Irish Sisters of Charity were a nineteenth-century religious order founded to care for the poor and terminally ill. Mother Mary Aikenhead, founder ofthe order, devoted her life to works of mercy with the poor Irish in Dublin. Roman Catholic archbishop Daniel Murray was a strong supporter of Mother Aikenhead's commitment to the "poorest of poor" and her ability to motivate others to work for the cause. In 1816, he secured papal approval for a new congregation and the Irish Sisters of Charity, an institution of women called to serve the poor and terminally ill was born. 8. Kerr, "Mother Mary Aikenhead," 14. 9. Kerr, "Mother Mary Aikenhead," 15. 10. Kerr, "Mother Mary Aikenhead," 16. 11. Humphreys, "Waiting for the Last Summons," 157. 12. Humphreys, "Waiting for the Last Summons," 159. The rules also disallowed the sisters from entering hospitals or homes of "heretics" unless there was hope of conversion to Catholicism. 13. Shirley du Boulay, Cicely Saunders, Founder of the Modern Hospice Movement (London: Hodder and Stoughton, 1984); Cicely Saunders, "Foreword," in Derek Doyle, Geoffrey W.C. Hanks, and Neil MacDonald, eds., Oxford Textbook of Palliative Medicine (London: Oxford University Press, 1993), v-viii. 14. Humphreys attributes these distinctions to middle- and upper-class morality during the Victorian Era. There were clear distinctions made between poverty and pauperism and the respectable and nonrespectable poor. It was believed that the nonworking or undeserving poor should be cared for in workhouse infirmaries. The conditions in these institutions were deliberately harsh to serve as a deterrent for reliance on them. The stigma of pauperism was used as a social tool to reduce it. 15. Humphreys, "Waiting for the Last Summons," 160-2. 16. Methodist theology and the Protestant ethic of dying was in contrast to a tra- ditional Catholic death. Catholic deathbed rituals were intended to prepare believers for death and served as a bridge between life on earth and life in heaven. To the Methodists, dying was part of living, and as such, Protestants could achieve a good death by the art of holy living. See Shai Lavi, "The Modern Art of Dying: The History of Euthanasia in America," PhD dissertation. University of California at Berkeley, 2001. 17. du Boulay, Cicely Saunders, 61. 18. Humphreys, "Waiting for the Last Summons," 61. 19. For more information about the role of Catholic benevolence in health care, see Christopher J. Kauffman, Ministry and Meaning: A Religious History of Catholic Health Care in the United States (New York: Crossroad, 1995); and Barbra Mann Wall, Unlikely Entrepreneurs: Catholic Sisters and the Hospital Marketplace, 1865-1925 (Columbus: The Ohio State University Press, 2005). 20. Katherine Burton, Sorrow Built a Bridge: A Daughter of Hawthorne (1937; New York: Image Books, 1956). See also Patricia Dunlavy Valenti, To Myself a Stranger: A Biogra- phy of Rose Hawthome Lathorp (Baton Rouge: Louisiana State University Press, 1991), 131; Sister Mary Joseph, Out of Many Hearts (New York: The Servants of Relief for Incurable Cancer, 1981), 22. Reweaving a Tapestry of Care 139

21. Hawthorne and Huber received permission from the Dominicans to form a religious community. Rose took the religious name Sister Mary Alphonsa and Alice became Sister Mary Rose. On December 8, 1900, they professed vows as members of their new community, the Dominican Sisters, Congregation of St. Rose of Lima. 22. Hapenny, A Legacy of Love, 129. 23. The "quest for cure" and use of experimental treatments and surgeries in terminally ill cancer patients was of concern to Lathrop and other reformers during the early twentieth century. See, for example, Richard Cabot and Russell Dicks, The Art of Min- istering to the Sick (New York: Ferris Printing Company, 1936). The authors discussed problems associated with care for the sick and dying in research and teaching hospitals. They listed common patient complaints about physicians and nurses, including the tendency of physicians to focus too much on research and teaching rather than on the patient. 24. Mother M. Alphonsa to Mother M. Rose, August 15, 1908, Archives of the Servants of Relief for Incurable Cancer, Hawthorne, New York. 25. Valenti, To Myself a Stranger, 170; Walsh, The History of Nursing, 270. 26. Burton, Sorrow Built a Bridge, 253. These words were written in a letter to James Walsh, MD, PhD, a benefactor, supporter, and historian of nursing. 27. The window remains at the entrance of St. Christopher's. Tasma's story has been repeated frequently in books and articles about Saunders and St. Christopher's. The author was told the story by Saunders in person, while looking through the window in May 2003. 28. Brompton's Cocktail was developed in 1896 when a surgeon, Herbert Snow, demonstrated that a combination of morphine and cocaine could relieve pain in cancer patients. This concoction was introduced in the early 1930s at St. Luke's, as was around- the-clock dosing. Although there was considerable interest in the mixture in the 1960s and 1970s, physician Robert Tvjfycross asserts it has no place in modern palliative medicine, despite the almost cult-like following who believe in the mixture as a panacea for cancer pain. Although the formulations vary, Brompton's Cocktail typically contains 15 mg morphine hydrochloride and 10 mg cocaine hydrochloride per 10 ml ofthe cocktail. For more information about early hospice symptom-management guidelines, see Stoddard, The Hos- pice Movement, 292-305. For more information, see Ronald Melzack, Balfour Mount, and J.M. Gordon, "The Brompton Mixture Versus Morphine Solution Given Orally: Effects on Pain," Canadian Medical Association Journal, 120 (1979): 435-8; Cicely Saunders, "Dying of Cancer," St. Thomas's Hospital Gazette, 56, no. 2 (1958): 37-47; Robert Twycross, "The Brompton Cocktail," in John J. Bonica and Vittorio Ventafridda, eds.. International Sym- posium on Pain of Advanced Cancer, Advances in Pain Research and Therapy 2 (New York: Raven Press, 1979). 29. du Boulay, Cicely Saunders, 60-73. 30. Cicely Saunders, "Origins: International Perspectives Then and Now," Hospice Journal, 14, no. 3/4 (1999): 3. Both Clark and du Boulay detail this era of Saunders's life in some detail. 31. Cicely Saunders, "The Treatment of Intractable Pain in Terminal Cancer," Pro- ceedings ofthe Royal Society of Medicine, 56 (1963): 95-7. There is little documentation of Saunders's research methods or statistical analysis. She often cited anecdotal evidence, patients' stories, and, beginning in 1960, pictures of patients as evidence, which raises questions about the limitations of her research. 140 JOY BUCK

32. Saunders, although prolific in her writing and a propagandist for palliative care, spent more time focusing on patient care, fund-raising, and administtative duties at St. Christopher's. Two of the researchers who have played prominent roles in palliative-care research are Robert Twycross and Balfour Mount. In fact, Saunders preferred the use of diamotphine instead of morphine for management of cancer pain. When the actual effectiveness was studied by Twycross, however, there was no clinically observable difference between the two drugs given orally with adjuvant treatment. See Robert Twycross, "Choice of Analygesic in Terminal Cancer Care: Morphine or Diamorphinei'" Pain 3 (1977): 93- 104. 33. Saundets, "The Treatment of Intractable Pain," 195. Although in Saunders's earliet writings she speaks of the compassion that the Sisters of Charity had for patients, in later descriptions she states that they were more concerned for patients' souls. 34. Saunders, "The Treatment of Intractable Pain," 195. 35. Cicely Saunders, "The Challenges of Terminal Care," in Thomas Symington and R. L. Carter, eds.. Scientific Foundations of Oncology (London: Heinemann Medical Books, 1976), 673-9. 36. Cicely Saunders, "The Patient's Response to Treatment: A Photographic Presen- tation," Proceedings of the Fourth National Symposium, Catastrophic Illness in the Seventies: Critical Issues and Complex Decisions (New York: Cancer Care, 1971). 37. Saunders contacted various experts in cancer care, including Dr. Robert Lober- field of the New York City Cancer Committee, Professor W. Bean of the University of Iowa, and Dr. John Heller of the U.S. National Cancer Institute. See Clark, Cicely Saunders: Selected Letters, for more documentation of her correspondence with American scholars. 38. Cicely Saunders, "Report of Tour in the United States of America, Spring 1963," Dame Cicely Saunders Papers, Hospice History Project, Sheffield, England, box 57, folder 2/1/92, 1 (hereinafter CSHHP). Clark reports that Saundets went through a lot of trouble to develop this report and was somewhat pessimistic about how many people would want copies. She was surprised to be contacted by so many people for copies that she ran out of them. 39. Saunders, "Report," 2. There were many people she met who did not receive a copy of the report. Quite a few people requested copies of the report. In response to their queries, Saunders explained that she had sent reports to those who had given her money. It is also interesting to note that Saunders was cautioned to downplay the role of religion in hospice, although for her it was the basis of her work. 40. Other homes are in Philadelphia; Atlanta; Fall River, Massachusetts; St. Paul, Minnesota; and Parma, Ohio. To date, these homes have cared for some 92,000 patients of all creeds and races over the years - all of it free. To this day, tbe sisters do not accept contributions from patients or families, nor do they take government funding or insurance payments. Bills are paid from an endowment fund, investments, and public and private donations. 41. Saunders, "Report," 24. 42. Saunders, "Report," 24. 43. There were quite a few institutions in the United States, predominantly operated by religious and philanthropic groups. For example. Calvary Hospital in New York City and Youville Hospital in Cambridge, Massachusetts, were facilities dedicated solely to the care of terminally ill patients. Reweaving a Tapestry of Care 141

44. Saunders uses the word "trained" in her report. There were differences in nursing education in the United States and the UK. Saunders expressed some concern about nursing education and the move toward professionalism. 45. This finding is substantiated, at least to some degree, by a study done by Yale-New Haven Hospital by sociologist August HoUingshead and pediatrician Ray Duff, funded by the USPHS Division of Nursing. Based on observations of nurses working with patients, they noted there were discrepancies in the nursing staffs knowledge of patient diagnosis and treatment and their understanding of patients' emotional problems. See Duff and HoUingshead, "Physicians, Nurses, and Patients," in Raymond S. Duff and August B. HoUingshead, eds.. Sickness and Society (New York: Harper and Row, 1968), 217-47. AG. Saunders, "Report," 16. 47. Saunders, "Report," 15. 48. This observation reflects the transition of nursing education from training schools to the university. It also reflects the quality of the schools she visited. 49. ViWAtgAtAtVfpXzw,InterpersonalNursingTheory{HeviYot\i:G.V.V\xtmai, 1952). 50. This finding reflects the influence of the psychiatric/mental health nursing movement that was flourishing at Yale at this time. Wald trained with Hildegarde Peplau at Rutgers prior to returning to Yale to creating an MS program in mental health psychiatric nursing in the late 1950s. 51. Saunders was referring to Jeanne Quint's [Benoliel] seminal research on nursing education and care of the dying, Phyllis Verhonick's research on decubitus ulcer care and problem solving, and Harriet Werley's work on the development of nursing research. 52. Saunders, "Report," 24. 53. Saundets was particularly impressed with the wotk of existentialist philosopher- theologians Paul Tillich and Martin Buber. For Tillich, see, for example, "Autobiographical Reflections," in Charles W. Kegley, ed.. The Theology of Paul Tillich: A Revised and Updated Classic (New York: Pilgrim Press, 1982); "Being and Love," in Ruth Nanda Anshen, ed.. Moral Principles of Action (New York: Harper and Brothers, 1952); Jack Mouw and Robert P. Scharlemann, "Bibliography of the Publications of Paul Tillich," in Kegley, The Theology of Paul Tillich, 395-423. Buber was a renowned scholar of Jewish tradition and literature. To Buber, the basis of religious faith was the relation between man and God, the relation to the eternal Thou. Within the I-Thou relationship, any statement made about God also reflected the nature of man. For example, see Martin Buber and Judith Buber-Agassi, Martin Buber on Psychology and Psychotherapy: Essays, Letters and Dialogue (Syracuse, NY: Syracuse University Press, 1999). 54. Florence Wald, interview with the author, tape recording, July 21, 2001, Branfotd, Connecticut. 55. Wald has recently won awards for lifetime achievements in hospice/palliative care from the Hospice and Palliative Nurses Association and the American Academy of Hospice and Palliative Physicians and was named a living legend by the Academy of Nursing. "Medi- care Hospice Regulations" hearing before Subcommittee on Health of the Committee on Finance, U.S. Senate, 98th Congress, first sess., September 15, 1983 (Washington, DC: U.S. Government Printing Office, 1984), 12-13. Senator Durenberger, chair of the committee, gave the recognition to Wald during a committee hearing on the hospice Medicare benefit. 142 JOY BUCK

56. See Florence Wald, "Emerging Nursing Practice," American Journal of Public Health, 56, no. 8 (1966): 1252-60. 57. Wald, "Emerging Nursing Practice," 1259. 58. Wald was not the only American nurse who was concerned about the type of care afforded terminally ill patients. Starting in the 1950s, articles in the nursing literature began calling for a new approach to care of the dying and changes in nursing education. The U.S. Public Health Service Division of Nursing funded several studies on institutional care of the dying. See, for example, Jeanne Quint, The Nurse and the Dying Patient (New Yotk: Macmillan, 1967); David Sudnow, Passing On: The Social Organization of Dying (Englewood Cliffs, NJ: Prentice-Hall, 1967); Barney G. Glaser and Anselm L. Strauss, Awareness of Dying (Chicago: Aldine, 1965); Barney G. Glaser and Anselm L. Strauss, Time for Dying (Chicago: Aldine, 1968). See also Jeanne Benoliel, "Nursing Research on Death, Dying, & Terminal Illness: Development, Present State, & Prospects," Annual Review of Nursing Research, 1 (1983): 101-30. 59. Wald, interview, July 21, 2001. 60. Wald, "Emerging Nursing Practice," 1259. 61. Wald, "Emerging Nursing Practice," 1259. 62. Clark, Cicely Saunders: Selected Letters, 87. Although some of Saunders's expenses were covered by travel grants, she was dependent on consultation fees to cover travel expenses and donations that were sent to support St. Christopher's. Issues about money appear quite often in correspondence with Wald and other Americans. 63. Both Saunders and Wald wanted the visiting professorship to be longer than six weeks, but there was not enough money in the endowment to allow for this. 64. During Saunders's stay at Yale, she met with Dr. Elisabeth Kubler-Ross and Dr. Colin Murray Parkes. These two psychiatrists would play a significant role in the advancement of terminal-care reform. 65. CSHHP, Box 57, "The Moment of Truth - Some Aspects of Care of the Dying Patient," presented at the Yale School of Nursing, April 28, 1966. 66. Wald, interview, July 21, 2001. Saunders was a prolific contributor to both medical and nursing literature during the 1960s, 1970s, and 1980s. Her philosophy was well received in nursing circles, less so in medical circles. See, for example. Cicely Saunders, "Watch with Me," Nursing Times, 61, no. 48 (1965): 1615-17; Cicely Saunders, "Care of the Dying," Nursing Times, 9 (1959): 960-1. 67. Saunders, "The Moment of Truth," 3. 68. Saunders, "The Moment of Truth," 5. 69. Publications based on research funded by the Division include Quint, The Nurse and the Dying Patient, David Sudnow, Passing On: The Social Organization of Dying (Englewood Cliffs, NJ: Prentice-Hall, 1967); Glaser and Strauss, Awareness of Dying, Glaser and Strauss, Time for Dying. See also Benoliel, "Nursing Research on Death, Dying, & Terminal Illness." 70. Duff and HoUingshead, "Physicians, Nurses, and Patients," in Duff and HoUingshead, eds.. Sickness and Society, 217-47. 71. Letter from Florence Wald to Cicely Saunders dated October 1968, CSHHP, box 58, folder 2/1/100. 72. Interdisciplinary Study, Research Record, 10-29-1970, 1, Florence and Henry Wald Papers, Manuscripts and Archives, Yale University (hereinafter FHWYU), box 24, folder 60. Reweaving a Tapestry of Care 143

73. Interdisciplinary Study, 2-5. Many of the nurses at St. Christopher's were Angli- can nuns, and the Christian religious symbols incorporated into the structure are unmistak- able, even if there was not overt discussion of a particular religious paradigm. Non-Christians might well interpret this differently than Saunders. 74. Interdisciplinary Study, 3. 75. The differences in approach were immediately apparent to Dobihal, who served as directot of the chaplaincy program at Yale-New Haven Hospital. Although he met with some success in changing the culture of the hospital, it was an uphill battle. 76. Edward Dobihal, "Progress Report: First Observation and Impressions of St. Christopher's Hospice" (1970), 10, Edward Dobihal Papers, Manuscripts and Archives, Yale University, box 1, folder 14 (hereinafter EDYU). 77. Dobihal, "Progress Report," 13. 78. Dobihal, "Progress Report," 15. 79. Wald, interview, July 21, 2001; Edward Dobihal, interview with the author, July 20, 2001. See also Florence Wald, "Development of an Interdisciplinary Team to Care for Dying Patients and Their Families," ANA Clinical Conferences (1969): 47—55; Florence Wald, "Terminal Care and Nursing Education," American Journal of Nursing, 67 (1979): 1762-4. 80. Steering Committee Minutes, 3/3/1971, FHWYU. Israel used social science frameworks and methods to create "meaningful communities." Her area of interest was small-group dynamics and social communication. 81. Steering Committee Minutes, 3. 82. Steering Committee Minutes, 3. 83. Steering Committee Minutes, 1-5. 84. Steering Committee Minutes, 2. In this assertion, Saunders is similar to the approach taken to spiritual care at St. Luke's Hospice. In this context, Christianity was the unifying framework rather than any specific denominational orthodoxy. 85. Steering Committee Minutes, 5. 86. Steering Committee Minutes, 4-7. 87. St. Christopher's Hospice: Discussion Group on Religious Foundation 6, September 22, 1971, EDYU, box 1, folder 3, 1-12. 88. Hospice Planning Group Steering Committee Minutes, Philosophy Statement, April 7, 1971, EDYU, box 1, folder 5. 89. Lawrence Altman, "LSD and Heroin Found Helpfiil in Treatment of Ter- minally 111," New York Times, November 13, 1971, 1. LSD is one of the major drugs making up the hallucinogen class. For more information on hallucinogens, see http://www.nida.nih.gov/Infofax/lsd.html. The modern antidrug movement or "war against drugs" officially began with the Nixon administration. For more on the history of the drug wars in the United States, see David F. Musto, American Disease: Origins of Narcotic Control (London: Oxford University Press, 1999); for information on the counterculture during the 1960s, see Terry Anderson, The Movement and the Sixties: Protest in American from Greensboro to Wounded Knee ($ie.y/Yoi\!i: Oxford University Press, 1995). 90. These concerns were well founded. There was a significant antidrug sentiment during this time, and in some areas, criminal charges were brought against physicians who ordered narcotics for patients. 91. Edward Dobihal, "Letter to Mr. C. Pierce Taylor, Executive Director, Connecticut Hospital Planning Commission" (1971), 1—3, EDYU, box 1, folder 3. 144 JOY BUCK

92. Wald, interview, 2001. Dobihal, interview, 2001. 93. Yo-Li Chan, "Thoughts on FacUity Planning," n.d., FHWYU, 2001-M-041, box 6. 94. Yo-Li Chan, "Thoughts," 2; Hospice, Inc., "To Honor All Life: A National Demonstration Center to Protect the Rights of the Terminally 111," appendix D, 1-2, FHWYU, Series I, box 3, folder 23. 95. Wald, interview, 2001; Dobihal, interview, 2001. 96. Hospice, Inc., "Hospice: A Vision," October 1973, 2, EDYU, box 1, folder 4. 97. Wald, interview, 2001; Dobihal, interview, 2001; Donna Diers, interview by author, tape recording, December 19, 2000, New Haven, Connecticut. 98. Florence Wald, "First Annual Hospice Staff Report," January 14, 1974, FHWYU, box 5, folder 56. 99. Joy Buck, "Rights of Passage: Reforming Care of the Dying, 1965-1986," PhD dissertation. University of Virginia, Charlottesville, 2005. 100. Wald, "Staff Report," 3. 101. Hospice, Inc., Progress Report and Program Plan Regional Hospice Develop- ment Program, January 29, 1973, 10, FHWYU, box 22, folder 11. 102. Hospice, Inc., Progress Report, 10. 103. Elisabeth Kubler-Ross, On Death and Dying (New Yoik: Macmillan, 1969). 104. Elisabeth Kubler-Ross, On Death and Dying (New York: Macmillan, 1969). 105. Kubler-Ross, On Death and Dying. 106. Kubler-Ross's work has been criticized by some for describing the grieving process as being linear. Kubler-Ross asserts, however, that the process is neither linear nor predictable. The stages were meant to provide a framework to help professionals and lay people normalize rather than pathologize death and grief. 107. The euthanasia movement clearly had a more grassroots foundation and focused on the individual. The death-and-dying movement remained predominantly in the world of academia among philosophers, theologians, and psychologists. 108. Peter Filene, In the Arms of Others: A Cultural History of the Right-to-Die in America (Chicago: Ivan Dee, 1998). 109. Derek Gill, Quest: The Life of Elisabeth Kubler-Ross (New York: Harper and Row, 1980). 110. Hospice, Inc., Annual Report to National Institutes of Health Contract No. NOl-CN-55053, September 1, 1975, 55, EDYU, box 1, folder 4. 111. For more on the development of hospice during this time frame, see Buck, "Rights of Passage," 148-223; Joy Buck, "Home Hospice Versus Home Health: Coopera- tion, Competition, and Co-optation," Nursing History Review, 12 (2004): 25-46. 112. "The Hospice Movement," Washington Post, February 18, 1978, A16. 113. Florence Wald, interview with author, December 18, 2000, New Haven, Connecticut. 114. Last Acts, Means to a Better End: A Report on Dying in America Today (New Jersey: Robert Wood Johnson Foundation, 2002). 115. SUPPORT Study Investigators, "A ControUed Trial to Improve Care for Se- riously 111 Hospitalized Pments," Journal of the American Medical Association, 274, no. 20 (1995): 1591-9. 116. Last Acts, Means to a Better End. Reweaving a Tapestry of Care 145

117. See for example, Hugh Heclo, "The Sixties False Dawn: Awakenings, Move- ments, & Postmodern Decision Making," in Brian Balogh, ed.. Integrating the Sixties: The Origins, Structure, and Legitimacy of Public Policy in a Turbulent Decade (University Park: Pennsylvania University Press, 1996); James T. Patterson, "A Great Society and the Rise of Rights-Consciousness," in Grand Expectations: The United States, 1945—1974 (New York: Oxford University Press, 1996), 562-93; W.J. Rorabaugh, "Challenging Authority, Seeking Community, & Empowerment in the New Left, Black Power, & Feminism," in Balogh, Integrating the Sixties, 106-43. 118. Florence Wald, "Terminal Care and Nursing Education," American Journal of Nursing, 61 (1979): 1762-4. 119. Clark, Cicely Saunders, 12-13. View publication stats